improving-environments-care-at-end-of-life-eight-uk-pilot-sites-waller-dewar-masterson-finn-april-2008

In 2006 a pilot programme was launched in partnership with NHS charities and Marie CurieCancer Care to improve Environments for Care at End of Life.. We were able to launch this pilot pr

IMPROVING ENVIRONMENTS FOR CARE AT END OF LIFE

Lessons from eight UK pilot sites

Sarah Waller

Steve Dewar

Abigail Masterson

Hedley Finn

The King’s Fund has been running its nationally recognised award winning Enhancing the Healing Environment programme since 2000 In 2006 a pilot programme was launched in partnership with NHS charities and Marie Curie

Cancer Care to improve Environments for Care at End of Life This publication

reports the lessons learnt from the pilot and the concurrent action research.

© King’s Fund 2008

First published 2008 by the King’s Fund

Charity registration number: 207401

All rights reserved, including the right of reproduction in whole or in part in any form

Edited by Jane Sugarman

Cover design and typesetting by Andrew Haig & Associates

Printed in the UK by Andus Print

Photography: Image of new room, Marie Cure Cancer Care, Hampstead supplied by Rendertime Artwork and photograph of artwork, Marie Curie Hospice, Hampstead by Carole Andrews Photograph of hydrotherapy pool, Marie Cure Hospice, Hampstead

by Rachel Anticoni All other photographs by Hedley Finn

About the authors v

Contents

Project directory 47

About the authors

Sarah Waller is the Programme Director for the King’s Fund’s Enhancing the Healing

Environment programme She joined the King’s Fund in 2000 to develop the programmefollowing a career in nursing and human resources management in the NHS and

Department of Health She is a non-executive director for the London Ambulance ServiceNHS Trust and Project Manager for the London Board Leadership Programme She wasappointed CBE for services to nursing and the NHS in the 2008 New Year honours list

Steve Dewar is Director of Funding and Development at the King’s Fund He specialises in

ideas for health care improvement, professionalism and the nature of personal andorganisational learning As a non-medic with a background in operational research, he hadnine years' experience in the NHS as a researcher and public health specialist, and aschange manager in a district general hospital He has written extensively on a range ofhealth care issues

Abigail Masterson established her own consultancy company – Abi Masterson Consulting

Ltd – in 1998 Prior to this she held clinical, education and research posts in organisationsincluding the Royal College of Nursing and the School for Policy Studies at the University ofBristol She undertakes research and evaluation work for a wide range of health andeducation organisations nationally and internationally Much of her work has been

published in the practitioner-oriented and academic press

Hedley Finn is design consultant to the Enhancing the Healing Environment Programme

and has been a major contributor to the programme since its inception As well as havingundertaken assignments for international clients such as Vodafone and Barclays Bank, healso works as a communications consultant for various NHS trusts and other organisationssuch as the Camelot Foundation He is the founder and Chair of Radio Lollipop and wasappointed MBE in 1992 for his work for charity

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The King’s Fund’s President, HRH The Prince of Wales, has played a key role in supportingthe Enhancing the Healing Environment programme since its launch in 2000 We weredelighted that he was able to join us at the launch of the Environments for Care at End ofLife (ECEL) pilot programme, which this publication celebrates We are indebted to him forhis continuing interest in the programme and his special concern for improving

environments for care for those who are dying and for those who are bereaved

We were able to launch this pilot programme as a result of a unique funding partnership ofthe King’s Fund, NHS charities and Marie Curie Cancer Care We would like to place onrecord our thanks to those members of the NHS Charities Association, and in particulartheir convenor John Collinson, who have with their NHS trusts provided the capital fundingfor the individual schemes We were also delighted that Marie Curie Cancer Care chose tojoin the pilot programme supporting their two participating hospices with funding for theirprojects

We are fortunate in the range and number of individuals and organisations who continue

to support the healing environment programme, including Sue Cooper, Susan Francis,Vicki Hume, Susan Hunter, Kate Trant, colleagues from Henley Salt Landscapes,

Nightingale Associates, Phillips lighting and Tate Modern

Our thanks go to the team members of the eight participating organisations for theirdedication and sheer hard work, and to all those who have supported them in developingtheir projects including their trust boards, special trustees, and leagues of friends It is atribute to their success that this publication marks the launch of a further Department ofHealth sponsored programme to improve Environments of Care at End of Life

This report presents work to improve the environment of care for those who are dying,bereaved or deceased Eight projects were undertaken by teams from hospitals andhospices in England and Scotland, and the programme was led by the King’s Fund andsupported by the charitable trusts associated with each participating organisation.

The work is an adaptation of the King’s Fund’s Enhancing the Healing Environment (EHE)programme This programme has already worked with 130 teams from 119 NHS trusts, 2hospices and 5 of Her Majesty’s prisons More than 1,500 staff and patients have beeninvolved in improving their health care environment

The programme encourages and enables local teams to work in partnership with serviceusers to improve the environment in which they deliver care The programme consists oftwo elements: a development programme for a nurse-led, multidisciplinary team and agrant for the team to undertake a project to improve their patient environment Throughoutour work on the environment of care, one theme has remained constant – the need forhealth care settings that make patients feel cared for and staff feel valued

Section 1 of this report presents a literature review of the evidence for improving end-of-lifeenvironments Section 2 gives a short description of each project working to improve anenvironment of care for those who are dying, bereaved or deceased Section 3 provides ananalysis of the lessons learnt across all the sites Section 4 gives findings from a

consensus-building exercise with all the teams and experts in end-of-life care, and

Section 5 summarises a number of lessons from this early work and suggests further areasfor development and evaluation

The following are the key recommendations arising from this pilot programme

As a result of the literature review and our practical experience we recommend that the

Department of Health and other organisations that fund academic research call for andsupport further research into how spaces unique to end-of-life care should make peoplefeel; on the use and acceptability of language and signage related to end-of-life careenvironments; on how best to involve dying people and bereaved relatives in the designand delivery of end-of-life care services; and on the need for designated palliative carefacilities in acute hospital settings

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Summary

As a result of our practical experience we recommend that all the settings within which

end-of-life care occurs provide:

a room where patient and family can be taken for confidential discussions

the option of single room accommodation designed to engender a feeling ofhomeliness where patients retain control over their environment

informal gathering spaces and places where families can meet, confer and talk withcare staff

guest rooms where close family or friends can stay overnight with facilities for cateringand internet access

appropriate places for ‘viewing’ the deceased

Our practical experience also leads us to recommend that all health service providers

include care of the dying, bereaved and deceased in corporate induction programmes forall staff and that professional training for all staff groups should include material on theimpact of the environment in end-of-life care

As a result of our consultative conference, considering the issues raised by the work, we recommend the Department of Health should develop national standards for the

environment for end-of-life care, significantly increase investment in these environmentsand ensure that policy and practice development enables everybody to make choicesabout where they would prefer to die and to revisit that choice as their condition changes

In 2004 NHS Estates asked their Design Brief Working Group, an interdisciplinary group set

up to study subjects related to health care design, to consider the hospital environment

where people die Their report A Place to Die with Dignity: Creating a supportive

environment (NHS Estates 2005) was relevant for all those involved in end-of-life care.

This report informed us that the places where people die, where families are counselledafter bereavement, and where friends and relatives view the bodies of their loved ones areoften neglected Given our experience working to enhance the healing environment acrossthe NHS, this report prompted us to consider a specific pilot programme to learn whatmight be done to improve the environments for care at the end of life

In 2005 the King’s Fund approached the NHS Charities Association to ask if any of theirmember charities would be willing to work in partnership with the King’s Fund and theirNHS trusts to fund a pilot Enhancing the Healing Environment (EHE) programme focusing

on environments for care at the end of life (ECEL) In January 2006, in partnership with sixNHS trusts, supported by their charities, and two Marie Curie Cancer Care hospices, thepilot programme was formally launched

The eight projects that came out of this were undertaken by teams from hospitals andhospices in England and Scotland Half the projects focused on improving mortuaryfacilities, possibly indicating the generally poor state of these facilities in the NHS Thework at all sites was influenced by a literature review of the evidence base, which

identified the characteristics of a good environment for care at end of life The authorspresent a summary of this literature review in Section 1

As the work started, the need to improve end-of-life care has become a matter of intenseinterest to those who shape policy, as well as to the many clinicians who provide services

at the end of life The development of a Department of Health end-of-life strategy forEngland (to be published in 2008) and the review of end-of-life services as part of theLondon health care review exercise commissioned by NHS London and led by Lord AraDarzi during 2007, are but two examples of the growing recognition of the need to improveend-of-life care

The Department of Health support for the launch of a national roll-out of this programme toinclude 20 further end-of-life environments across the country is testimony to the way inwhich the teams involved in this early work have demonstrated a vital and positive impact

on care through their work Four of the projects in this pilot programme were chosen ascase studies where an action research approach was used to identify the early lessonsbeing learnt

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Foreword

The learning is already important Given the extension of the programme up and down thecountry, the forthcoming strategy, and the continued work on end-of-life care as part of thenational NHS next stage review, I believe this publication will prove to be a valuable andtimely resource.

Sir Cyril Chantler

Chairman, King’s Fund

The Enhancing the Healing Environment (EHE) programme was launched by HRH The Prince

of Wales, President of the King’s Fund, in 2000, as part of the King’s Fund’s activities tomark the millennium By spring 2008 150 teams from 138 NHS trusts, 2 hospices and 6 ofHer Majesty’s prisons will have joined the programme and more than 1,500 staff andpatients have been involved in improving their health care environment

The aim of the programme is to encourage and enable local teams to work in partnershipwith service users to improve the environment in which they deliver care The underlyingethos is that any changes must promote patient well-being and foster a healing

environment

The programme consists of two main elements:

development programme for a nurse-led, multidisciplinary trust team

a grant for the team to undertake a project to improve their patient environment.The development programme equips teams with the knowledge and skills that they need

to undertake their projects, particularly in fostering co-operation and engagement withpatients and the public Team members have the opportunity to explore practical ways inwhich the health care environment can be improved by the use of colour, light, art anddesign

Each trust could choose the area in which it wished to undertake its project provided that:there would be a physical improvement in an area used by patients; they could

demonstrate user involvement throughout the project; and their scheme represented quality design standards and good value for money

high-Two independent evaluations of the programme were published by the Department ofHealth The Medical Architecture Research Unit (MARU) was jointly commissioned by NHSEstates and the King’s Fund to evaluate the acute and mental heath schemes in London(NHS Estates and King’s Fund 2003) Its report highlighted the way in which many projectsbring a sense of normality to the hospital environment:

creating a sense of welcome and reassurance on arrival

providing garden retreats that give contrast to the pressurised internal space of thehospital

designing social spaces that provide dignified and comfortable places for meetingrelatives and friends away from the clinical environment

The evaluation, undertaken by the York Health Economics Consortium in partnership withRKW Healthcare Strategists (Department of Health and King’s Fund 2006), highlighted thesignificant benefits for patients, staff and organisations in investing in the EHE model ofteam-based projects led by clinical staff in partnership with service users

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Introduction

Without exception, the impact of the EHE programme in the participating trusts hasextended beyond the individual projects The programme has supported the individualdevelopment of team members, innovative new approaches to patient involvement andthe formation of closer links with local communities, as well as having a major impact onthe development of major PFI (Private Finance Initiative) schemes.

Origins of the ECEL programme

St George’s Hospital in London was one of the first trusts to join the EHE programme in

2000 As part of their project the team chose to improve the room used by relatives forviewing the body of a relative or friend who has died on their way to hospital or in theaccident and emergency department (A&E) The staff recognised that this room did notcreate the right atmosphere and wished to improve the room radically using colour, lightand stained glass The redesigned and refurbished room now provides a sensitive, quietand deliberately non-denominational room for relatives If the relatives wished, religiousartefacts could be placed in the small wall alcoves The specially designed window allowslight into the area, but screens it from the ambulances parked outside and gives privacy tothose using the room

As a direct result of the project the clinical staff also reviewed their procedures for caringfor those who have died and those who are bereaved in the department The trust has nowgone on to redesign its main viewing facility and has developed a garden for people whohave been bereaved next to the mortuary area The A&E viewing room project, which costunder £5,000, provided an early example of how a relatively small environmentalimprovement could improve the care given to people who have been bereaved This smallproject demonstrated that the EHE approach could improve end-of-life care

When NHS Estates published their report A Place to Die with Dignity: Creating a supportive environment (NHS Estates 2005), it alerted us to a wider need to improve environments for

those who are dying, bereaved or deceased The objectives of this ‘pilot’ were to testwhether the EHE programme could be adapted to these sensitive health careenvironments and achieve a positive impact, not just on the environments for those whoare dying, bereaved or deceased, but also on the individuals and organisations who carefor them While retaining the ethos of the programme, the pilot study adapted the EHE

approach – for example, by including faith leaders in many of the project teams A mix ofteam leaders was encouraged, with most teams led by nurses or midwives although teamleaders also included bereavement and commissioning officers Many other professionalsand estates representatives were included in the teams.

In 2006, the pilot programme, consisting of a partnership with six NHS trusts, supported

by their charities, and two Marie Curie Cancer Care hospices, was formally launched at anevent attended by HRH The Prince of Wales, President of the King’s Fund, at St James’Palace

When this work began, there was a weak evidence base It is hoped that this report willstart to build greater understanding of the importance and potential positive role thatenvironment can play in improving end-of-life care It is part of an ongoing commitment bythe King’s Fund to ensure a virtual cycle of demonstration and reflection, so that the nextstage of this work can substantially add to the currently limited knowledge in this area

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The review that informed the pilot projects sought to identify literature describing theimpact of the environment on end-of-life care The most striking finding was the relativelack of research literature Nevertheless, there are some significant pointers towardspositive therapeutic environments; these include the value of creating home-likeenvironments, incorporating natural light and natural elements in the design, and ways forthe patient and carers to control lighting, artwork and noise.

An ideal environment?

People die in many places, and patients receiving care at the end of their life may be found

on any ward or unit (Shipman 2005) End-of-life care is given in all inpatient service areasincluding critical care environments, accident and emergency departments (A&E), mentalhealth wards, areas dedicated to learning disability services, children’s and maternitysettings, and ambulances (NHS Estates 2005)

The literature tells us much about those aspects of the environment that are not conducive

to end-of-life care including: noise, lack of privacy, crowded rooms, lack of appropriateseating for patients such as electric recliner chairs and lack of amenities for families who

are staying (Shipman 2005; Kayser-Jones et al 2006) It is widely acknowledged that there

may be particular issues in designing a therapeutic environment for children, patientsdying from illnesses other than cancer, and people from different cultural and ethnicbackgrounds (Secretary of State for Health 2004; Wilson 2004) However, the literatureprovides few practical and positive examples of good environments from which to learn.When it comes to providing high-quality end-of-life care, acute general ward areas poseparticular difficulties Nurses on general medical wards report that the physical

surroundings reduce the quality of care that they are able to provide to dying patients.These environmental impediments include the lack of private patient rooms, an absence of

telephones from patient rooms and drab décor (Thompson et al 2006).

Homeliness

The importance of creating a home-like, peaceful environment for end-of-life care has frequently

been emphasised (Furman 2000; Brazil et al 2004; Oates 2004; Silver 2004) A home-like

feeling can be enabled by allowing patients to bring in personal possessions to ‘individualise’

their space (Faber-Langendoen and Lanken 2000; Chaudhury et al 2003; Lawson et al 2003; Finch 2005; NHS Estates 2005; Schweitzer et al 2006) The use of art is also thought to

humanise the health environment (Coats 2004) As the US Institute for Healthcare Improvement(2006) notes: ‘In the past 30 years, hospitals have done a good job in ‘de-medicalizing’ the

childbirth experience They should aim to do the same for the dying experience.’

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Literature review

1

The case for specialist beds

Research has demonstrated that patients in single rooms are more satisfied with thehospital environment, their interactions with staff and overall quality of care Being lookedafter in a single room enables greater opportunities to interact with family members andfriends A single room gives patients control over personal information and the opportunity

to rest; it reduces noise and embarrassment, increases privacy and the quality of sleep Italso offers the ability to adjust lighting and temperature and enables family members to

stay without upsetting others (Chaudhury et al 2003; Scottish Association of Community Hospitals and Scottish Partnership for Palliative Care 2003; Ulrich et al 2004).

It has also been suggested that a dying patient in a bay or open ward can cause distress to

other patients (Brown et al 2005; Thompson et al 2006) Nurses in a recent study related to

end-of-life care on acute medical wards reported that it was distressing for the ‘well’patient and family to be privy to an intimate time between the dying person and his or her

family (Thompson et al 2006) Conversely some sources have commented that some

patients prefer the company afforded by sharing (Parker 1998; Kirk 2002) and so patientchoice is key For example, a spokesperson from the Pilgrim’s Hospice near Ashford, Kentsaid: ‘There is a move to introduce a national standard for hospices that requires units toprovide only single rooms, however at the Pilgrim’s Hospice the conscious decision wastaken to allow patients to share their space with others if they so wished.’ (Parker 2001)Current Department of Health policy suggests moving a patient to a more private area ofthe ward or a private room as death approaches (Department of Health 2005) However, it

is difficult to anticipate the time of death, particularly in patients dying of illnesses otherthan cancer, such as heart failure, and this affects decisions about where the patientshould be placed and when (Ellershaw and Ward 2003; NHS Confederation 2005; NHSEstates 2005) Furthermore, there is research evidence from Canada to suggest thattransitions in the location of care and who provides it can be extremely stressful forindividuals facing death and for those close to them, particularly if the transition involves

interaction with a new set of health professionals (Burge et al 2006).

If specialist end-of-life beds can be made available in hospitals, the literature wouldsuggest that these should consist of large single rooms that are calm and quiet anddesigned to encourage the presence of family and friends A ‘family zone’ with ample

space for chairs, a sofa bed, fridge, etc is advocated (Burk et al 2003; Centre for Global Partnership 2003; NHS Estates 2003b, 2005; Ulrich et al 2004) The space needs to be

private and soundproofed and there should be private break-out areas, with refreshmentfacilities in close proximity (NHS Estates 2005) In particular, the provision of furnituresuch as a reclining chair for patients is frequently mentioned (Scottish Association ofCommunity Hospitals and Scottish Partnership for Palliative Care 2003; Shipman 2005).The rooms should allow patients to exert some control over their immediate environmentsuch as lighting, television, artwork (Smith 2006)

A specialist end-of-life room can enable the typical requests and needs of individuals inthe end-stages of life to be met; these might include open visiting hours, visits from pets,being able to listen to music, and a place for families to prepare favourite foods and eattogether (Faber-Langendoen and Lanken 2000; Scottish Association of CommunityHospitals and Scottish Partnership for Palliative Care 2003; Gilpin and Schweitzer 2006;InformeDesign 2006; Institute for Healthcare Improvement 2006; Smith 2006) Specialist

rooms would also enable family and friends to find meaningful roles in caring for thepatient – for example, assisting with activities of daily living such as eating, washing anddressing, if they so choose (Institute for Healthcare Improvement 2006).

Views, colours, art and sound

Across all health care environments views of nature and/or gardens are reported to

increase levels of positive feelings (Stern et al 2003) Access to outside space is also

deemed to be extremely valuable for patients, their families and friends (Smith 2006).Many articles and policy documents recommend the use of soothing colours, although theresearch-based knowledge available to make informed decisions about colour is limited

and conflicting (Tofle et al 2006) For example, gender and age differences with regard to

preferred colour schemes have been identified, with boys preferring ‘cold’ colours andgirls ‘warm’ colours; younger children like bold colours and older children more mutedtones (NHS Estates 2003a) In addition, natural age-related changes to sight may mean

that in general older people experience colours differently from younger people (Dalke et al

2004, 2005) Commentators also advise against overuse of one particular colour andemphasise how important it is to think through the effects on appearance and appraisal of

skin tone health (Dalke et al 2004) If people have a limited degree of control over their

environment, exposure to particularly strong or potentially dislikeable colours should be

limited (Dalke et al 2004).

The findings in relation to art have similar limitations The research highlights the potentialtherapeutic impact of art that matches the viewer’s taste, but also highlights the dangers

of a mismatch with the individual’s taste Get it right and art can reduce stress and anxiety,

reduce pain and increase patient satisfaction (Palmer and Nash 1991; Ulrich et al 2004).

Get it wrong and art can invoke strong negative reactions Most adults prefer realistic orrepresentational art depicting nature and generally art of this type has been demonstrated

to produce positive feelings and be relaxing However, people who are interested in arttend to like emotionally challenging work using a range of styles (NHS Estates 2003b).Given the potential for the same approach to induce contradictory reactions in differentpatients it would seem more important to give patients control over the art in their room.Little has been written about the specific benefits of music and sound in end-of-life care.However, peace and the absence of unwanted sounds are highlighted (Henderson 2004;

Brown et al 2005) Noise reduction has been demonstrated to reduce stress and heart rate,

and improve sleep (NHS Estates 2003b) A reduction in stress, anxiety, blood pressure,respiration rates and pain is regularly asserted as being related to listening to runningwater, soothing or pleasant sounds, religious music and the sound of people talking Thefollowing have been identified as ‘soothing’ or ‘pleasant’ sounds: music, rain, the wind,the sea, songbirds and bees (NHS Estates 2003a) Once again, however, the key appears

to be relevance and appropriateness to the individual (Schweitzer et al 2006).

Spirituality

Spirituality is fundamental to discussions around end-of-life issues, yet there appears to

be little written about the physical characteristics that make an environment spiritual orabout the physical environmental conditions required to successfully meet spiritual careneeds Different religions have specific requirements for end-of-life care, so it would seem

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important for the space to be flexible in order to enable appropriate use by the full range ofreligious groups.

Seeking views

Despite a growing recognition of the importance of capturing, understanding andmeasuring patients’ and carers’ experiences of care, research with patients and significantothers about end-of-life care is still in its infancy, both nationally and internationally Avariety of research approaches and methods, including interviews, focus groups andquestionnaire surveys, has been employed to get a better understanding of good end-of-life care, but little is known about the best ways and most appropriate time to involvedying people and bereaved relatives in such research and service development

Unique features of end-of-life environments

Concerns regularly raised in the literature that relate uniquely to end-of-life care are thetransfer of the body to the mortuary, the relatives’ journey to the mortuary, the location ofthe mortuary, viewing rooms and bereavement rooms/suites, and dealing with thedeceased person’s belongings It has been suggested that these dimensions of care notonly have an immediate impact but can also influence the subsequent bereavement

process (Kennedy 1999; Forte et al 2004; NHS Estates 2005) Discussions with team

members on the Enhancing the Healing Environment project also raised the issue ofmanaging ‘the empty bed’

Conclusions

More than 300,00 people die in hospital per year and so the environment for end-of-lifecare should be of fundamental concern to policy-makers and NHS managers This review ofthe literature identifies a number of factors that are repeatedly reported as encouragingwell-being and likely to be important to people at the end of their lives The characteristics

of a therapeutic environment at the end of life are: home-like environments, single rooms,facilities for family members, natural light, design that incorporates elements of nature,soothing colours and artwork, windows with views, being able to enjoy pleasant sounds,and having access to outside space and gardens

In addition there are issues that relate uniquely to the end of life: transfer to the mortuary,relatives’ journey to the mortuary, location of the mortuary, viewing rooms and

bereavement rooms/suites, and dealing with the deceased person’s belongings andmanaging the empty bed Patients and family members are increasingly recognised as the

‘experts’ on the subjective quality of their experience, yet research with patients andsignificant others about end-of-life care is still in its infancy

Introducing the projects

This section presents descriptions of each of the eight projects who took part in theprogramme The short descriptions and photographs aim to provide an overview of theenvironments chosen, demonstrate the changes made and summarise some of the earlyoutcomes of the work

Each participating trust and hospice chose its own project sites, which had to be areas thatwere to be used by those who were dying and/or their relatives It was suggested thatprojects could include offices used for bereavement counselling, quiet and multi-faithrooms, and mortuary viewing areas

Half of the schemes undertaken by the Environments for Care at End of Life (ECEL) pilot groupfocused on mortuary viewing facilities Each was different and had its own specific challenges.However, one area of commonality was the need to ensure that the approach to the viewing suitewas in keeping with the refurbished facilities All too often the corridors leading to the mortuary,typically at the back of the hospital, were used as service corridors and provided storage spacefor deliveries

The other four projects focused on redesigning a visitors’ room, improvements to a bereavementsuite, the creation of palliative care rooms and the redesign of patient rooms in a hospice.Each team was asked to undertake early and ongoing consultation as part of the work,which needed to be done sensitively However, the short descriptions illustrate thenumber of innovative ways of getting patients, families, friends and staff involved,including inclusive launch events, mobile displays, visits to galleries and gardens, andtours of current facilities

During the course of their project each team examined current working practices in thearea in which their scheme was located Many of the ECEL teams, particularly those thatfocused on improving mortuary viewing suites, found that bereavement policies wereeither out of date or poorly communicated It is noticeable that the revision of theseprocedures has been one common and important wider benefit of the work

An important additional outcome of the programme has been the individual development

of team members Many have taken on wider roles or gained promotion as a result of theirinvolvement in the programme A significant number of team members have used theirnew-found knowledge and skills to improve environments in other parts of theirorganisations and are contributing to the planning of new buildings

The short commentaries and photographs of each of the eight projects are followed byfurther details in the project directory at the end of the report

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The pilot projects

2

Birmingham Children’s Hospital NHS Foundation Trust

Rainbow Suite: refurbishment of viewing suite

At the Birmingham Children’s Hospital it was felt that the viewing suite was difficult toaccess and not particularly welcoming The entrance to the suite was a long way from themain hospital entrance and in a corridor leading to the laboratories; access was via aplain, unmarked door

The viewing suite consisted of the viewing room, which contained both a bed and a Moses’basket, and a small waiting area with facilities for tea/coffee making, a few toys and atoilet The whole area was well kept but the atmosphere was institutional, as evidenced bythe fixtures and fittings used in the viewing room and toilet which were standard hospitalsanitary ware

The team wanted to provide bereaved parents and families of different faiths with anenvironment that was calming, pleasant, respectful and dignified, an environment wherethey could spend time with their child Through the project the team hoped to increasestaff awareness, understanding and appreciation of the diverse needs of newly bereavedfamilies

The team was led by the bereavement care services co-ordinator and included a capitalprojects manager, a hospital chaplain, a bereavement counsellor and a junior sister Theadvisory group set up by the team included the mortuary technician, a pathology servicesrepresentative, social workers, nurses, the hospital arts co-ordinator and two familyrepresentatives

An interior designer was not appointed by the team, but it was made clear that the designneeded to provide appropriate storage for religious artefacts and toys The refurbishedtoilet had to include baby-changing facilities, and the whole suite needed to have a moredomestic feel through improvement of the general décor and furnishings

The doors to the laboratories were moved further along the corridor, so that a welcomesign to the suite and a wooden door could be incorporated The entrance was made lessintimidating by the use of glass bricks next to the new door The suite included a largerwaiting area, lit by a light well and a large window looking out on the small courtyardgarden, created from scratch, with a planted area and a wooden double seat for parentsthat was specially commissioned.

An amazing transformation – ambience feels exactly right, tastefully and positively supportive for parents.

A calm, serene and dignified environment for families to spend time and say their goodbyes.

TEAM MEMBERS

The viewing room has been re-oriented so that the child’sbody can be transported moreeasily from the mortuary Thelarge mortuary door is behindvoile and fabric curtains,chosen to blend in with theoverall colour scheme Care was taken to choose high-quality furniture and fittings, withsofas and chairs throughout the suite Domestic basins and toilet ware were installed, plusbaby-changing facilities, and the whole design complemented with fresh flowers andplants

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IMPROVED WAITING AREA

WOODEN BENCH IN COURTYARD

Christie Hospital NHS Foundation Trust

Bereavement suite refurbishment

For this project, a number of areas of Christie Hospital were considered, but eventually themortuary viewing room and corridor were chosen for refurbishment The waiting area of theviewing room was drab and dated, with the sloping corridor leading to it at the back of thehospital This service corridor was often used as storage area One side of the corridor hadclear windows overlooking the kitchen preparation area; bereaved relatives or friendscould therefore see and be seen by kitchen staff on their way to and from the suite Inaddition the signs were not clear

Consultation was undertaken by the project team and involved the Patient and PublicInvolvement (PPI) Forum, Patient Advice and Liaison Service (PALS), mortuary staff andcurrent patients A number of drop-in sessions were held so that volunteers and staff couldlearn about the project; information was also given in the trust newsletters and on thetrust website The PPI Forum chose to help finance the project through a strategic healthauthority (SHA) capital grant

The team was led by a senior nurse/modern matron and included: an estates projectmanager, the chaplaincy co-ordinator, a clinical services manager and the trust’s qualityassurance/PPI officer The team set up a project group within the trust, including patientrepresentatives, an interior designer, the mortuary and catering managers, and acomplementary therapist

An abstract signature image was developed in the workshops held with patients and staff,which were led by the trust’s artist in residence The image was used extensively along thecorridor, around the door to the viewing area and over the windows in the waiting room.The original artwork for the image was hung in the corridor, and will be used for all futuresigns and information relating to bereavement services

A new ‘arch’ was built half-way down the corridor, signalling the entrance to thebereavement suite, and the corridor was redecorated and the flooring replaced Seats wereprovided for people to rest The kitchen windows were obscured with opaque film, chosen

to match the new flooring design and artwork panels

Redecoration of the waiting room has created a calm and relaxing atmosphere, withinstallation of a more flexible lighting system There is now an office for a bereavementofficer and the toilet facilities have been improved.

The viewing area was not part of the original scheme but was also redecorated, with theadded purchase of high-backed armchairs Voile curtains were hung across the window tothe viewing area and a heavy curtain hid the mortuary door

At the start of the project, an audit of use of the viewing area was carried out; although thenumber of viewings have not increased since the project completed, the length of timespent by relatives in the suite has doubled and repeat viewings have increased

During the project, the team contributed to the development of the trust’s pathway for care

of dying people and revision of the policy at end of life The trust is now considering how tostreamline administrative procedures after death

An aesthetic survey of all public areas within the hospital was subsequently completed bythe team In addition to consideration of how to improve the signs used, the team hascontributed to an art, design and environment strategy group that will co-ordinate anycapital programme or refurbishment within the trust

Being involved in the scheme has developed much more than my appreciation of art, understanding of colour and the importance of good design It has encouraged me to expect more from the environment, given me the opportunity to work as part of a project team, to learn from my team mates and to be involved in something exciting and different.

TEAM MEMBER

13

REDECORATED WAITING ROOM

ENTRANCE TO BEREAVEMENT SUITE

This is a fantastic opportunity It is so important to carry good quality care through when a patient dies, so that the bereaved are well looked after too.

The area chosen for the new centre was on the second floor of the main building – an areadiscrete but accessible The team were able to contribute to the design of three areas,including a waiting room, two interview rooms and an open plan office The

refurbishments were funded through the trust’s capital programme

The team was led by the lead nurse for palliative care and included: the seniorbereavement officer, the head of spiritual care, a PALS manager and a capital planningmanager A larger support group was formed at the hospital including representatives fromthe Guy’s and St Thomas’ Charity, the mortuary service, and the arts and design group.One of the key objectives of the team was to increase the amount of natural light in thecentre by opening up the old ‘arch’ windows There is now a dedicated waiting area andtwo different size interview rooms to accommodate either single relatives or larger groups

CORRIDOR (BEFORE)

OPENED-UP ARCH WINDOW

As a direct result of their participation in the ECEL programme, a successful bid was made

to the Friends of St Thomas’ for funds to purchase special furniture for the new centre.Further capital was made available by the trust to provide disabled toilet facilities next tothe centre

The team recognised that as a result of their bereavement many relatives and friendsfound visiting the centre a difficult experience They wanted to provide an area in thecorridor for people to sit either before or after seeing centre staff, so the project focused onimproving the corridor next to the new centre, particularly the large window facing themain door to the centre’s waiting room A glass artwork for the large window wascommissioned but before eliciting proposals from artists a consultation questionnaire wasused to gain patients’ views on what colours they would or would not like to see used.Views of relatives were sought at memorial services and those of staff and patients at thetrust open day, and via internal newsletters and their intranet Five artists were short-listedand invited to submit proposals The project team met with the chosen artist to review theinitial design and glass samples, and a final design agreed

During the project planning phase, the team discovered that the south wing of St Thomas’

is grade 2 listed; this led to some delay in planning and installation of the window

15

NEW CORRIDOR WINDOW

King’s College Hospital NHS Foundation Trust

Viewing room refurbishment

Before finalising the ECEL project site for refurbishment, there was wide consultation; acomprehensive communications strategy was developed to ensure that everyone had theopportunity to give their views/opinions Leaflets were produced and a notice board set up

in the main hospital corridor Articles were written for the trust magazine and the teamobtained permission to develop a dedicated section of the trust’s website for the project.Presentations were given to many hospital and local groups The team adopted a signatureimage – a dandelion – to signpost all bereavement services

The ECEL team was led by the assistant director of nursing and included: an estatesrepresentative, Head of Nursing for Palliative Care, a PPI representative and the hospital chaplain

As a result of the consultation, the viewing room, which was called the chapel of rest, waschosen as the main focus for the project Although it was a small area, there was theopportunity to make better use of the space and remove the heavy curtains around thebier, which gave the room a claustrophobic feel The aim was to bring tranquillity andbeauty to the room, improve the lighting and ventilation, and open the space up as much

as possible

The team recognised that the corridor to the viewing room needed to be refurbished, withalternative service corridors being found Following the team’s presentation to the trust’sboard, it was agreed that there would be capital funding to enable inclusion of the corridor

in the project

This project has made a difference and was never just about the environment.

The environment drew us in and then turned everything upside down… and I am glad

it did!

TEAM MEMBER

ENTRANCE TO VIEWING AREA (BEFORE)

NEW ENTRANCE TO VIEWING AREA

The main door from the viewing area onto the corridorwas replaced and the lock changed to a keypad Asmall light box with a dandelion was placed by thedoor, which is lit when the room is in use The glassdoors dividing the waiting area from the viewing areawere retained because this was required by thecoroner; the bier was also retained because there was

no space for a bed The old pall was replaced by aspecially commissioned one, which was designed tocomplement the new colour scheme, using anembroidered dandelion New wooden cupboards wereinstalled Rather than religious artefacts, differentreligious symbols can, if relatives wish, be projectedonto the wall above the bier by a small projector.Important features of the new design in the waiting area are the commissioned artworkand light boxes featuring dandelions The neutral colour scheme, new leather furniture,flooring and wooden cupboards were chosen to blend in with the colours of the chosenimages A small half-screen was placed in the room to obscure the glass doors to theviewing room itself

During information-gathering at the early stage the team recognised that the trust’sbereavement policy needed review The team leader was instrumental in developing thenew policy, which has now been distributed throughout the trust

The project raised the profile of end-of-life care within the trust As a direct result thebereavement care policy was revised and care of dying people now forms part of the trust’sinduction for all staff A further project to improve the bereavement offices has started withfunding from the Nurses’ League

17

ENTRANCE TO VIEWING ROOM

USE OF DIFFERENT RELIGIOUS SYMBOLS

Royal Brompton and Harefield NHS Trust

Royal Brompton Hospital: creation of bereavement office and refurbishment of viewing room

The Royal Brompton Hospital consists of a number of buildings on a busy road in westLondon The ‘family room’ where relatives saw bereavement staff was located in theFulham Road building some 5–10 minutes from the mortuary viewing room, which wasbehind the Sidney Street building After a viewing most families would need to return tothe Fulham Road building to complete the required paperwork; the team were keen torelocate services in a way that avoided this long walk

The viewing room, located in the basement next to the mortuary, had been refurbishedsome four years previously, but the décor was tired and dated The adjoining small waitingarea was cramped and had no natural light; the corridor was used to store trolleys and was

a main service route for the building There had been discussion about securing a room forbereaved relatives in the same building as the viewing room for some time After detailednegotiations, the team acquired a small office near the front hall of the Sidney Streetbuilding, next to the PALS office This provided an opportunity to improve the situation forbereaved relatives

The team was led by the PALS manager and included: a hospital chaplain, a senior nurse, abusiness manager from estates and a personal assistant Many others including mortuarystaff played an important part in planning the project

At the start of the project, staff were invited to participate in a series of ‘guided tours’ ofthe viewing room This raised the profile of the project and the bereavement service withinthe trust Participants in the tours were kept informed about the project as it developed:meetings were held with staff, surveys undertaken and information posted on thehospital’s website The tours proved popular and helped to reduce the traffic in thecorridor outside the viewing room as people became aware of the need for quiet

REFURBISHED VIEWING ROOM REFURBISHED VIEWING ROOM SHOWING COMMISSIONED ARTWORK

To link the relocated family room (on the ground floor) with the viewing area and adjacentwaiting room (in the basement), the team chose the same colour scheme, fixtures andfittings for both areas The leather furniture included small sofas and bucket and stackablechairs, chosen to give a warm feel to the place; this was carried through by use of

dimmable wall lights and small table lamps The family room was linked to the courtyardgarden that it overlooks by the use of plants; artwork gave added interest A light box wasplaced outside the room to indicate when it was in use The waiting area in the viewingroom was extended by knocking out a cupboard The adjoining toilet was upgraded andnow complies with the Disability Discrimination Act A small glass window was included inthe viewing room’s door so that family members could glimpse the room before entering oreven just view the deceased through the glass A blind could be drawn if required Theviewing room was repainted with soft blue walls at either end and vertical blinds were put

on the windows Specially designed wood panels hid the mortuary entrance The bier was

replaced with a bed and counterpane The corridorleading to the viewing room will be refurbished once amajor internal project has been completed

The project, in particular the ‘tours’, has raised theprofile of end-of-life care in the trust In additionrevised guidelines for staff accompanying relatives tothe viewing room have been written and circulatedthroughout the hospital

Working on a project like this makes you really want to create something wonderful.

TEAM MEMBER

19

COURTYARD

United Bristol Healthcare NHS Trust

St Michael’s Hospital: creation of a palliative care facility

Before starting on the ECEL programme, the Chief Nurse undertook a considerable amount

of work to research palliative care needs within the trust This work had established theneed for up to four palliative care beds at any one time and the trust had already agreed toestablish a two-bed palliative care facility

A location was found at St Michael’s Hospital, a short way from the main hospital site; itwas decided to convert a four-bed bay at the end of a ward into two en-suite roomsspecifically designed for patients with palliative care needs The ward staff already caredfor some patients who needed palliative care and the plan was that they, together with thetrust’s palliative care team, would look after patients in the suite The aim would be tostabilise patients’ treatment, pain and symptom control, and prepare them for discharge

to their own homes

The team was led by the assistant director of nursing/head of midwifery and included: anestates project manager, the head of specialist nursing services, the hospital chaplain and

a member of the trust’s PPI Forum; the last also represented the Charitable Trustsupporting the project At the start of the project, the team drafted a communicationsstrategy to ensure that all key stakeholders were aware of the proposal to establish adedicated palliative care suite; this also gave them the opportunity to contribute to projectplanning for the new service and to the room design

Initial plans were drawn up to convert the four-bed bay into two en-suite rooms; the views

of patients who were under the care of the palliative care team were sought on aspects ofdesign, colour, lighting and feel The team aimed to create rooms that would be calm,quiet and encourage family and friends to visit It was decided to use natural materials –wood, leather and fabric – and colours throughout the scheme, and for fixtures and fittings

to be to a hotel standard The team ensured that infection control and hospital standardswere met Both rooms were furnished in the same style, with care taken in choosingfurniture; this included leather sofa beds and chairs with fold-down arms, so that visitorscould sit close to the bed – close enough to hold the patient’s hand The bed has wooden

ends, adding to the non-institutional feel of the rooms, and the bed table tilts to makereading easier Throughout the design process the team wanted to allow patients as muchcontrol over the environment as practicable Lighting is controlled from beside the bed and

a coloured light-emitting diode (LED) feature was installed so that patients could choose adifferent colour lighting scheme for one wall if they wished The flat-screen TV is alsocontrolled from beside the bed Temperature of the radiators can be controlled by thepatient and/or their visitors

As patients requested ‘something beautiful’, individual designer fruitbowls were purchased A local bathroom retailer was asked to preparedesigns and install the en-suite facilities The chosen design

maximised the space available and included a walk-in shower areawith seat The toilet cistern was hidden behind the tiled walls and amodern basin with slate surround was installed

The wood theme carried through to the main door, which has an ovalwindow so that staff can unobtrusively check the patient if required.The two rooms are located just inside the main ward door by theentrance to the ward In addition to creation of the two rooms,additional funding was found to repaint and refurbish the main wardcorridor A local photographer was commissioned to produce a series ofphotographs of local scenes

The principles learnt by team members have beenused to influence ward refurbishments, theredecoration of the viewing facility and othercapital schemes

Marie Curie Hospice, Glasgow

Redesign and refurbishment of a relatives’ room

A number of possible projects were considered by staff, and the decision was taken tofocus on the relatives’ room on the second floor, which was felt to be a manageableproject with the potential to improve visitors’ facilities The choice of project site allowedthe team to engage with patients and families, to seek their views on what improvementsthey would like to see; it also demonstrated what could be achieved to staff and potentialdonors

When the team joined the ECEL programme, plans were already well advanced for building

a new Marie Curie hospice in Glasgow The team wanted to demonstrate what could beachieved through consultation and good design in order to influence the final design forthe new building

The aim of the project was to transform what was a bland, cold and under-utilised roominto a welcoming, user-friendly and flexible space The room had wonderful views thatwere obscured by the heavy dark wooden frames on the windows

The project was led by the Capital Projects Commissioning Officer, who had a nursingbackground The team included: the architect for the new building, the hospice manager,practice development nurse and a support services assistant (housekeeper) One of thearchitects involved in the hospice rebuilding scheme was seconded to the ECEL

project team

The entire programme has been a wonderful experience, full of practical information combined with leadership training, practical help on project management and access to a new network of contacts with a shared passion.

TEAM MEMBER

The team chose to launch theirproject with a high-profilebreakfast and a presentation foreverybody in the hospice toraise awareness and interest

Current usage of the room wasaudited and questionnaireswere prepared for service users and focus groups arranged for staff In particular relativeswere asked how they might like to use the room As the proposals developed, staff,relatives and members of the hospice bereavement group were engaged to review thedesign and decisions about final colours and finishes

RELATIVES’ ROOM (BEFORE)

REFURBISHED RELATIVES’ ROOM